Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Sunday, February 27, 2011

So much for all that great pablum about achieving balance, etc. Oh, it was true enough at the time, it just didn’t last more than a week or so. It was a great week, though, and it provides a clear goal at which to aim. Right after all those pretty words, along came a request to add a task that seemed sufficiently important that I agreed, and that has been total overload ever since. Fortunately, it has only two more phases of exertion left, that I can anticipate, and then I hope to re-focus on achieving the elusive balance.

One of the illuminating aspects of this whole brain tumor experience has been coming to terms with nonnegotiable limits. Before this, most of the walls I ran into, I could find a way around or convince myself it wasn't a direction I wanted to go anyway. That is emphatically no longer the case. There are a lot of things I would like or want to do--most of them things I used to do--that are not options for me anymore. Let me hasten to add that I'm very pleased to be able to be making this complaint and do not take that ability lightly.

Still, imposed limits are just that, and at times, I chafe. This overload task ought to have been completely within bounds. Other times, like now, I am fearful, which is another feeling that I don’t much like. On top of the recent overload, this week brings a schedule beyond anything I have managed successfully since well before surgery, when unbeknownst to me, the tumor was pressing its case (as it were) on the surrounding territory. I would not have and did not lightly enter into the schedule this week presents. There weren't good choices, though, so off I embark on trying to to make it work. Send strong thoughts, please.

Monday, February 21, 2011

Our mail the other day contained a letter from the clinic imaging center. “Oh,” I thought, “it’s time for another brain scan.” Actually, the letter was a reminder to schedule a mammogram. My first response, though, is a pretty accurate indicator of my world these days, in that while it’s receding somewhat, the tumor and the surgery are still defining characteristics in my self image. I gave a talk Friday night to a group, and the man who was assigned to introduce me had a large scar on the back of his head. When I asked (which I probably never would have done previously), yep, craniotomy. Brain stem tumor. Familial. When he was 22. Still has balance issues, but otherwise mostly forgets about it. I made him laugh, though, when I told him that, if I ever write a craniotomy adventure memoir, I’m going to call it “Perfect Hair for Brain Tumors.” Being able to laugh at this stuff is a must.

Speaking of laughing, when that isn’t happening, denial also really helps. Several of you asked after my last post if it meant some of the aftereffects of surgery I didn’t mention were improved when they weren’t listed among the remaining leftover effects. Nope. All it means is that I have selective recall and tend to suppress elements I’ve learned to deal with when they’re not immediate issues. For example, just like my brain tumor buddy at the talk, balance is still a challenge most of the time and except in my own home, I still don’t go down stairs without help. Visual overload can still be an issue and leads to downward spirals in balance, energy and memory. In places that are too loud, ditto. Yes, my scalp still clicks, and the strangenesses related to the entire right shoulder/arm/neck is omnipresent. I still do physical therapy and work on the balance and my arm/shoulder consistently. Whatever. The bottom line is still the same: these are the good problems to have, and I feel lucky. The selective recall is a positive feature in terms of coping, in my book.

Speaking of book, the new structure is an advance, but the writing still isn’t there. The reading of the version I put together didn’t lead to raves, to put it mildly. We haven’t given up; the contract is still in place, but the finish line is farther away.

It’s grey and rainy here today: the perfect day to stay indoors, tidy up some loose ends and then go back to looking at the book structure to see what kind of wrenching around I can do to play to its existing strengths and devise a plan for improving the parts my editor called too “drafty.”

Tuesday, February 8, 2011

Is there a word for the fourth- or fifth-ranking dog in a pack? We have a pack of two and our under-dog, Sophie, seems to rate about fourth or fifth in the group. Last night, as she was making odd noises in the night, I roused myself to check on her, worried maybe she was having another seizure. To our relief, she wasn’t, just snoring more strangely than usual. It did cause me to reflect thankfully on her relative absence of seizures of late; we changed her diet to very low-allergy food and never give her table scraps any more, both of which seem to have helped her. Of course, it’s hard to explain to a dog why the top dog gets table scraps as we clear the table and she does not. It would be nice to be able to draw the connection between her in-the-moment deprivation and her improved health. While experience with depriving children of things they want in the moment that aren’t good for them assures me she wouldn't like it any better, at least there would be a rational reason for her treatment beyond that she’s the doormat of the family.

Reflecting on things to be thankful for their absence caused me to do a quick inventory of all that I’m thankful for, as we approach two and a half years since my craniotomy adventure. Through a combination of gradual adjustment, improvement and changed expectations, life is pretty good. I still cannot read the comics (ever) or fiction (most of the time), I still tightly ration my energy, and I still work on regaining full use of my right shoulder and arm. And, I still can do most of the work I want to do, I can still travel and life is pretty good.

Through a combination of being formally retired and energy-rationing, we’ve hit a pattern to daily life that feels nicely balanced. I never was a morning person, and now I have the freedom to begin the days as slowly as feels right, without any guilt or sense that there are things I “should” be doing. I just don’t schedule stuff in the mornings. Similarly, I don’t schedule Mondays (now), reserving them for book work. The unstructured time of no-place-to-be brings a quality of life I never could have anticipated, and I luxuriate in it. Being formally retired and working essentially on contract has released me from most of the “should” rules I carried in my head all those years.

In a special bonus, last week’s storm brought almost a full week of found time, as two trips cancelled, and much here was shut down for a day or two. I used the time to bear down on the most recent restructuring of the book manuscript, which I’ve sent to my editor and am awaiting her verdict. I have been bracing for the worst and hoping for the best, and other than that, am trying to think about other things. It seems entirely possible to me that it will turn out that one of the things I cannot do anymore is write in long form, as Michael thinks this version isn’t very good and doesn’t sound like me. I hope my editor sees something in it, though, as it’s a project I’d dearly like to see through.

Sending that in has me mostly caught up with the backlog of things that I’ve owed people, which is a truly wonderful feeling. I’ve been luxuriating in it ever since, and wondering (hoping) that maybe this is the balance point: enough to do that I’m engaged and active and at a pace that is pleasant, not stressful. This particular balance (ok, for all of five or six days now) feels wonderful and I’d like to maintain it. If possible. That’s my current goal.

Wednesday, February 2, 2011

I continue to struggle with having way too much stuff and way too much paper. As I was working on paring some things down the other day both on my physical and computer desktops, I realized that I was printing almost as much new stuff as I was recycling. As I went back and looked at the pattern, I realized that I simply have not found a good way online to keep track of ideas, things to do and other specific pieces of information. Thus, I keep a paper to-do list, as none of the apps or programs we’ve tried seem to work well with how I think. I keep paper notes and reminders on projects that are underway, all in separate folders and/or stacks. I’ve tried starting ideas folders and putting notes on my computer in various forms, and none of those seem to work for me. That doesn’t mean I’ll give up trying, as I truly would like to reduce the amount of paper I have around me, but it also complicates the problem as I think about it.

As I was ruminating about all of that, I flashed on images of some of the bound books administrators I know carry around. Now that’s a system I truly do not understand: having notes about every single diverse project all in the same bound book? That would drive me nuts. I write a lot of notes to myself (I’m visual and kinesthetic, both) and the only way all the different projects keep moving forward is that they’re each decanted and segregated into their own little realm. I do the same thing with folders in my email and documents on my computer, notwithstanding the advice just to mush them all together and search them to find what’s needed. Maybe my memory is too fragile or something. Using a single notebook that is a chronologically straightforward but a topical mish-mash of information on every project interleaved seems messy to me, yet it clearly works really well for a lot of people. How does that work, anyway? Brad says that he tags his lab notebooks so he always knows where he is on the projects he’s working on, which makes sense to me if one is, as bench scientists are, required to have one continuous notebook for reasons of scientific rigor and integrity. But choosing to do it on purpose outside that realm? Confusing to me.

We are having a snow day here, as the weather has pretty much shut down the region. The timing is great, as I’m pushing hard to get a more-or-less complete skeleton of the book to my editor to see if she likes the most recent reincarnation of it any better than the previous ones. Wish me luck on that. I was scheduled to travel Monday/Tuesday and postponed the trip as it appeared that I might get to the destination but probably not home again. That left two--now three--complete open days, and I’ve been using them for a big push on this draft of the book. I’m hopeful, but it’s a bit soon to tell if this approach is going to work, or will crumble upon closer examination. Back at it now.

Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.